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15 September 2011

If you've been here for any length of time, you know what happened next. By the end of the day, we were back on ECMO. A day or two after that, we learned that Ewan had contracted a blood infection. And a day or two after that, everything was going downhill. He hadn't woken up all day. He hadn't moved. Kidneys were failing. Intestines were dying. Liver was giving up. None of his organs were getting the oxygen they needed. There were positive signs of serious and irreversible brain damage.

The most optimistic of Ewan's surgeons, a wizened older man with sparse light-colored hair and a bow tie, was honest with us about Ewan's condition. We don't see kids come back from this.

I could hardly believe we were being faced with these grim realities and the decision they imposed upon us. We didn't want to give up. And we certainly didn't want to let him go. But letting him linger and continue to fail slowly was unthinkable. I couldn't bear the thought of finding out about the death of my child with a grim middle-of-the-night phone call. If he was going to pass, I wanted to be with him when it happened. So we made the decision to have ECMO shut off, to let nature take its course while in the company of those who loved and fought for him -- and if that meant he was going to leave us, to send him off peacefully.

Photo by Mary Combs :: October 3, 2010

There were a lot of pictures I could have chosen to talk about this night. But this one reminds me of how for the first time in days, I got to beand feellikehis mama. All I was doing was wiping his nose (which was bleeding because of the thinners he was on for ECMO), an incredibly "mom" thing to do. Nurses had done everything else for him over the entirety of his hospital stay: changing diapers, taking care of his oral care, keeping him clean, even putting booties on him. For once it was him and his mama and papa, holding him and wiping his nose. I hated the circumstances, but I loved that in his final moments, it was just us. And we got to wipe his nose. It seems like a very small thing perhaps, and certainly not one of the more cherished aspects of parenthood. But for once, the task belonged to his us: his parents.

Ewan's attending physician came that night as we were all gathering together in his room. He told us that he thought our decision was brave. I'm still not sure if that's true. What I do know is that after a litany of circumstances and events we could not and would not have chosen, we finally got to choose something beautiful for our son. In a deep, wide ocean of not-as-it-should-be, we were able to find a little bit of just-as-it-should-be before he went from this life and into the next.

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In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share more as his birthday approaches, and have something special planned to share with you for the day itself.